In 2002 I got the earth shattering news that I could possibly have Multiple Sclerosis. In 2003 that news was confirmed. I was 29 years old. I wanted to start this blog to go over the last few years of dealing with this illness and look forward to the future as it happens. If I can give hope to just one person, that life isn't over when you get life changing news, then this will have been worthwhile!

MY BIRTHDAY!

Friday, 15 May 2009

Disappointed

I received a letter in the post yesterday, from my consultant. It was the results from my MRI scan, that I had in March. It says that new lesions have shown up and my consultant has said that it confirms that the new symptoms I am experiencing are as a result of a relapse. He also says that it would also support moving to a new disease modifying drug. By that, he is suggesting Tysabri or Campath.

I am disappointed that new lesions have shown up, but as Martin has said at least there is a reason for the new symptoms.

I am also a bit freaked out by the suggestion of the new drugs. I know he means these two because we discussed the possibility when I saw him in March. I haven't been sent any information about the drugs but I have looked on the internet about them. Campath is a little harder to find out about, but there seems to be a lot about Tysabri. Obviously the risks of these drugs jumps out at me immediately. So you can imagine what state my head is in at the moment.

I have an appointment with the consultant on Monday morning. So at least I don't have to wait too long before I can discuss everything with him.

My big problem is, that it is fore front in my mind. I didn't sleep well last night. And I can't stop thinking about it. The reason this is a problem is that it is my birthday on Sunday!!! I was poorly last year on my birthday so I am determined to have a good day this year. I just hope I am not thinking about treatment all day.

I'm glad that you like the photos I have shown you so far! So I will keep adding more each day for you all to see - let me know when you are bored of seeing them!!

8 comments:

Amelia, I am so sorry about your results. I have heard good things about the drugs. But I haven't looked into them very much. My heart is with you and hopefully by trying new drugs it will be stronger and be able to slow things down a bit.

Tysabri helps your body create & release up to 6 times more STEM CELLS into your blood stream.Many MS sites will NOT permit this information to be disseminated as it would create shortages of this amazing medicine. Tysabri is given to the sickest of the sick with MS after they've tried most everything else including azathioprine. Nearly ALL of the cases of PML are due to East Germans MSers previously on Imurak (eg. aza)...sadly it's been hyped as being caused by Tysabri....links...1993 link on how (anti-VLA mAb given to primates)(TYSABRI is anti-VLA-4 mAb for humans)http://www.pnas.org/content/90/20/9374

Thanks everyone.Your support, as always, is amazing. The fact that you all care so much gives me a great lift in fighting this disease.I plan to have a great day tomorrow and will deal with Monday's appointment head on, with Martin by my side - what else can I ask for?Love & hugs to you allXxXxX

Follow by Email

About Me

I am 43 years old and I have been happily married to Martin since 1998! We have 2 cats who are our beautiful babies! Oh yes and I have Multiple Sclerosis. I was diagnosed in 2002. I stopped working in 2004 but got a part time job at Asda from 2006 - 2009.
One of my main passions was being involved in theatre, especially singing and I have continued that by organising 3 charity concerts with Martin. We have raised over £6000 so far. I also make my own cards, when the MS lets me!
Welcome to my world......nice to meet you and feel free to join in! :-) XxXxX